Mum of boy with cerebral palsy: "Ethan inspires me every day"
Portadown woman opens up in fundraising bid for life changing operation
Last updated 19th Oct 2018
Mum of three Zoe Parkes has shared the struggles of living with a three-year-old son with cerebral palsy, in an attempt to raise £80,000 for pioneering surgery.
Ethan was diagnosed with the condition at nine months old, just seven months after his twin brother Luke died following complications from a premature birth.
The Portadown woman launched the fundraising campaign after learning Ethan would benefit from pioneering surgery in America, that could potentially see him walk.
Speaking exclusively to Downtown Cool FM, Zoe recalled the moment she heard her son would not live a normal life:
"The day after we returned to hospital after we buried Luke...they told us we could bring Ethan home.
"Which was great and we went out to get all of our newborn supplies for Ethan and when we came back I...guessed something was wrong just from the nurses' faces.
"The doctor told me that as part of their discharge summary they had undertaken some scans and they had discovered Ethan had discovered a brain injury as a result of the early birth."
The 38-year-old busy mum said the family did not know what to expect and had no idea what their son's future would entail:
"I remember the doctor coming to me, I was on my own with Ethan at the time and...the power just left my legs, I was completely traumatised, it was an absolute shock, I just didn't expect it.
"We took Ethan home that day and we...really didn't know what we were facing.
"That was a very difficult time and we did struggle with it but we were determined from that point on that we were going to do absolutely everything possible to make his life incredible."
Zoe and her husband Andrew then faced an agonising wait before they finally got a diagnosis that changed their lives forever:
"It was just pure terror, I had never really understood what that meant, I didn't know anything about it.
"I think you go into a state of shock obviously, it takes a long time to adjust and come to terms with it.
"Because the baby's so young you really can't see their potential and so you're questioning will they ever talk, will they ever smile, will they ever do all the things that a regular baby would do?"
The Medical Staffing Manager has two other children, Dylan who is eight and two-year-old Sophia.
She told us Ethan requires daily therapy, for the rest of his life and lives in chronic pain:
"His brain is sending the wrong signals to his lower extremities so they're making his legs stiff and painful.
"So it obviously makes it difficult and he can't walk or stand unaided.
"It's hard Ethan, I don't think has ever slept a night through, every night he'll wake maybe three, four, five times during the night and essentially that's because of the pain in his legs."
She paid tribute to her son's character and his love for life despite his disability:
"He's a great wee boy, he's a happy boy.
"Don't get me wrong he's a typical young, three-year-old boy and he gets frustrated and he doesn't like having to do therapy every day which becomes his routine.
"Cerebral palsy means you have to commit to a marathon of lifelong therapy which is his life but we try to do it in a way that makes it fun."
Despite the challenges of everyday life for the family, Zoe and Andrew found support from online forums where they contacted other parents whose children have cerebral palsy.
Zoe said she soon discovered a procedure in America which could improve Ethan's quality of life dramatically:
"We had to send off an awful lot of medical information to Dr Park in America and his team.
"So he reviewed all of this information and in the middle of July this year, we were given the news that he felt Ethan was a good candidate for a selective dorsal rhizotomy and he felt that this operation would give him the best chance to actually walk in the future with a walking aid or with crutches."
After further research, Zoe discovered the procedure would cost £80,000 as Ethan was not eligible for the operation through the National Health Service.
"The permanent reduction and the stiffness in his legs and the associated reduction in pain, was something that I just thought we had to pursue this, we had to give this a go.
"Sadly Ethan doesn't meet the criteria on the NHS for this operation because he is affected in all four limbs."
But despite the high cost, she says she is determined to raise the funds:
"Everyone has dreams for their children and ours is simply to watch our little boy walk one day.
"Disability in itself and the term cerebral palsy scared me at the beginning but actually now, Ethan inspires me every single day and he helps my husband and I just be the best parents we possibly can be."
Updates on Ethan's Journey to independence can be found on the facebook page
You can also donate to Ethan's campaign here